Thursday, May 18, 2006

MORE ABOUT AUTISM EVERY DAY

The video entitled Autism Every Day, if nothing else, has sparked a lively discussion within the autism community. Some are understandably hesitant to praise something produced by Autism Speaks, an organization that has yet to earn the trust of many who have been disappointed by too many institutions.

The criticism seems to take in two points: that the controversy surrounding the role of thimerosal and vaccines should have been dealt with forthrightly, and that the video could be seen as a solicitation for pity. One of the mothers who appeared on the video, Michele Iallonardi, posted a reply to some of that criticism on the Evidence of Harm board, and, with Michele’s kind permission, I am quoting her in part below.

I am the mother of three children who have autism. One has been vaccinated, two have been partly vaccinated. I am very interested and involved in biomedical interventions. They have been extremely helpful (we have been doing them for over two years) but my son, as you saw in the video, is far from recovered. My other two children, who are recovering, have been through no biomedical interventions other than changing their diets.

My point is this ⎯ when it comes to autism, there is no one answer for anything. Recovery is not only about biomedical intervention ⎯ maybe for some children, but not for everyone. Autism does have a genetic component (how do you explain three brothers with autism?). I do believe that thimerosal is a huge part of the problem (but not the only part) ⎯ my son with the most vaccinations is the most affected. But, no, I don’t think that all children can recover biomedically. And yes, some children do recover without any biomedical interventions at all.

My life is by no means “pitiful.” I wrote an article in TAP (the autism perspective) magazine last year entitled “I Have Three” talking about just how wonderful my life is with my children. Funny, I actually got flack about that article from some people (who have one child with autism, and were struggling to deal with that) saying that I was too positive (or delusional or crazy). I have written several articles since then about all of the wonderful things parenting children with autism has brought into my life. That being said, the reality is that life for my boys is difficult. Most people that I know don’t realize that. Happiness is a choice, yes, and we are happy. But being happy doesn’t mean that it is easy for my son to sit through glutathione shots, eat special food, or live in a world where he can’t effectively communicate. I’m happy, but I’m not happy about that. He is suffering ⎯ and I can never sit by and just be completely happy when all that is going on. I’ll never settle and accept it either. To quote another mom from the film: “I'm never going to say I quit. It’s just not in my vocabulary.”

To insinuate that I view my life as pitiful is just a hurtful statement that has no point. What I view as pitiful is the time and energy spent (or wasted) in our community criticizing each other. My own life is an example of both genetic and biomedical causes to autism. My own life is an example of how happiness is a choice ⎯ because we have certainly had four years from hell, with many medical problems, with three children diagnosed with autism in less than one year, but we are happier than most people I know. We are broke, we hate watching our children suffer, and we go through things that most people ⎯ even some on this list ⎯ could never imagine. That is the reality, and that is what the film wanted the public to understand.

Let’s be honest; life would be easier if our kids didn’t have autism, don’t you think?

One of my wife’s great phrases is that she’s not interested in a pity party; she wants to help our son get better. I think that’s similar to what Michele is trying to say.

Like many, I remain somewhat wary of Autism Speaks. But they seem to be saying the right things about wanting to find the truth about the causes and cures for autism. Could this video dealt more with the question of possible causes? Of course. But the point was to show one part of the spectrum. Frankly, I’m not too worried about the motive in making the film, because I just want people to know what life is like for some families with autism.

23 Comments:

For the first time since starting this blog, I have removed a comment I considered to be offensive. I would communicate that action directly to the person who posted the comment, but as it was done anonymously, that is not possible (although the location of the visitor gives me a clue as to who it might have been).

I agree: No pity parting here, or sob stories. The video was altogether one-sided in its presentation of autism: Sure, our lives are tough and not "as we might have hoped." For myself, I could not get through some days (weeks, minutes, months) without telling myself, there is always some good thing that happens even on the toughest days. There is always hope: there is so much that we can do; and there is the dignity of parents who don't need pity.

I'm curious about the mom who said two children are "recovering". What does that mean exactly? I can see my son is developing, for example. Does that mean he's "recovering"? Similar to recovering upholstery is what that sounds like.

Wade, I'm not sure I understand what you mean when you describe this video as showing a certain part or side of the spectrum. It seems like -- and I may be wrong -- that you have the idea that kids who have what you call 'special gifts' reside somewhere else on the spectrum than kids who fall down on the sidewalk, run toward traffic, shriek piercingly, etc. Is that what you are saying? Or is it that, even kids who can make three-pointers by age 18 and play Bach fugues from memory are also immensely challenging to raise?

I guess my confusion lies in my perception that the video isn't so much about autism as it is about how people react to autism. It might show a side of some spectrum, but it's not the autism spectrum.

I did not mean to imply that this video shows "the spectrum." On the contrary, it only shows part of the spectrum -- a part that has been all but ignored lately -- and the impact not just on children but on the families as well. And I certainly did not mean to imply that children with the level of problems we saw on the video cannot have gifts. They may; they may not. My point is that all we often see are the "feel good" stories that present a limited view. Many parents don't get to know about what gifts their children may have because those gifts can't be found.

"Let’s be honest; life would be easier if our kids didn’t have autism, don’t you think?"

Hi Wade, let's be totally honest; life ain't always easy, period.

Ascribing the difficulty to "because of autism" can lose sight of the reality that many such difficulties arise in the first place, due to society's incomplete understanding and state of being ill-equipped to work with autism.

I think Kristina sums it up pretty well when she says, "They need answers, funding, services, education. And we all need each other!"

Absolutely. Nobody should deny that many problems are caused -- or at the very least are greatly exacerbated -- by society's lack of accomodation. But there can likewise be no denial that some problems are inherent in autism.

I think part of the value of the video is to heighten awareness that accomodation is needed, almost as much as research, etc. The frustration of these four mothers over having to explain autism to the uneducated and unaware (well-meaning and otherwise) comes through.

Wade, I'm replying late because I was gone for a couple of days, picking my child up from college at the end of the semester.

When my child was younger he sometimes behaved in many ways like the children in the Autism Every Day video. I could have made a similar film about him by selecting the hard parts and leaving out the wonderful parts of his early life. It would have looked like hell, but it would have been misleading.

That video is propaganda. Its purpose is to show the immense challenges that parents of autistic kids face. Its purpose is not, I hope, to have people conclude that these children are hopeless losers from the wrong side of the spectrum. This video doesn't show us what these children are really like, or what their abilities are. I don't think it is fair to draw such negative conclusions about them based on editorial decisions by the people who made this video.

Likewise, if you see a "feel good" piece about an autistic kid's success at something, it is unfair to draw the conclusion that the kid and his family have not had to deal with the same issues as the people in Autism Every Day.

Kristina wrote a post about autism in the 50's. I think a video like Autism Every Day does much to perpetuate 50's-era thinking about autism. It encourages people to view the kids as sub-human, as so defective that it doesn't even matter what you say about them in their presence.

Everyone has problems. I'm not suggesting that they don't, nor that denial of life's problems is ever appropriate. What's needed is real understanding of the source of the problem, and support, assitance, and accomodation where needed. Time to get it all together doesn't hurt either in my opinion (I'm speaking from personal experience after a severed foot - the physical recovery and walking was a couple of years, but the psychological factors took many more).

Wade, I'd be curious about your thoughts on something. For the sake of argument/discussion, suppose the etiologies of autism are not well-determined until 10-15 years from now (and subsequent prevention/cure could be scientific reality at that point for some). Also for the sake of argument, let's leave the etiologies out of it - they could be genetic, they could be exogenous, or a complex combination of the two, or something else altogether.

In that scenario (which I will not assert to be necessarily true, as I don't have a crystal ball - mental exercise only), what's most important for children or families with children with autism during those next 10-15 years in your opinion?

... what's most important for children or families with children with autism during those next 10-15 years in your opinion?

I'm afraid my answer is almost as broad as the question, Dad o' Cameron. What's most important is the same thing that is most important for any family ⎯ raising children to be healthy, happy, and able to independently take their own place in an often-hostile world. At the same time, it would be nice to make that world a somewhat less hostile place.

I suspect your answer to the same question would be much the same, with our differences being on the means of addressing the broad goal. On that, I don’t think there can be any one answer for all families, and I’m not sure there will be even after the scientific questions you mentioned are settled with a greater degree of certainty.

For now, all any of us can do is act in good conscience by learning all we can, and then act by considering all factors ⎯ positive and negative ⎯ that are implicit in any particular decision.

With no disrespect intended to ANY parent of ANY ASD child and certainly not those in the video, I have to say that as usual, I am disappointed in what we as a community focus on in "educating" the public. I would love to see a shift from showing the behavioral/psychological side to how physically ill these kids really are. Bernard Rimland proved that autism is biologically based, but we still have psychologists diagnosing, treating and designing "behavioral" programs for our kids with little emphasis on physical/biomedical problems. The public is largely ignorant that these kids are sick and are hurting.

Before anyone jumps on me, let me say that I have a recovered child who is now six. He was very ill when diagnosed at 28 months with autism/MR. He did not respond to anything, stimmed, strabismus, hypotonia, petite mal seizures, leg turned in, nonverbal, was at 11 month age for language, stopped growing, ect. You all know the drill.

He is now recovered and not upholstery recovered either. He is in a play based kindergarten with no aides or anything...no diagnosis. His language is spontaneous and fluent totally indistinguishable from his peers except that people comment frequently on how articulate and friendly he is. He is healthy. All former health issues resolved. He makes us laugh constantly with his questions just like any other kid his age. He has never had any therapy or special education.

I realize that my child is unique and that no two children are alike, but I have yet to personally meet an ASD child who does not have multiple physical issues that are not resolved.

The reason I am writing anonymously is that the public does not understand how ill these kids are and if you resolve these issues the behavioral/psychological aspect disappears. I know it will be years before we make strides in this area and I am not about to label my child any longer as damaged. If my child had cancer, no one would dare question the depression, anger, frustration ect that may accompany the physical manifestations but we are still treating autism as a mainly psychological disorder.

"Before anyone jumps on me, let me say that I have a recovered child who is now six. He was very ill when diagnosed at 28 months with autism/MR. He did not respond to anything, stimmed, strabismus, hypotonia, petite mal seizures, leg turned in, nonverbal, was at 11 month age for language, stopped growing, ect. You all know the drill.

He is now recovered and not upholstery recovered either. He is in a play based kindergarten with no aides or anything...no diagnosis."

What I find extremely frustrating is that I hear stories like this, but they are often presented anonymously, and without scientific backup. To be clear, I'm a moderate bio-med parent, and I'm not doubting the account. What I'm frustrated by though is the lack of peer-reviewed scientific support for such accounts that can stand up to scrutiny.

Such study would make a significant difference to the view of autism that is widely held in the mainstream medical and scientific communities. The lack of study that can stand up to scrutiny makes such cases anecdotal and easily dismissable by those who we need to be willing to investigate wider causation models.

I am sorry, but this has been my experience with the medical community in general...they know NOTHING about nutrition and the power of the body to heal itself. While well-meaning, most doctors, including DAN's have been trained to believe that they can do better than nature. We have fallen for this.....vaccinations(sorry and I will be stoned for this, but if you do any real research on vaccines you will see that it is really just a big experiment)legal drugs, the chemical laden stuff that we now call food....ect. I know, double blind studies are the gold standard for "science". But if you really take a look at these and how they are performed and by whom there are lots of questions.My child was very sick...it was obvious to me and I changed pediatricans three times until I started researching on my own and guess what? Most of those with chronic neurological illness all share very similar underlying physical issues. The alternative community has known this for 15-20 YEARS and have been treating underlying causes.Although my son was/is mercury poisoned, I did not directly chelate him(with a drug). I used no drugs at all and very few supplements(since most are man-made and processed and hard for the body to use really). If I may recommend one book and it is sort of like a cookbook, but the info in it is amazing and very valuable for anyone with a chronic disorder. It is Sally Fallon's Nourishing Traditions. Or visit the Weston Price Foundation website or Pat Sullivan's site at patsullivan.com. His book Wellness Piece by Piece is also a great read.

My husband and I are both well-educated professionals who put our full faith in the medical community. We chose a Stanford grad pediatrican who was very popular in our community. We are now so far from that it is unbelievable. But if you read and research you will be shocked at what you will find and how that coupled with your instincts as a parent along with advise from a few educated practioners can set you on the right path. It is hard, that I will not deny and expensive and frustrating at times, but we are so much better for it. I substituted science and double blind studies with common sense...try it.

Why are most of the recovered kids parents anonymous? It is to protect our kids. We lived in a small community where many knew my son was autistic and we moved a few months ago. We got tired of the stares and "tests" he was given to see if he really was normal. And then if he passed all that, the what drug are you giving him question would come up. No one believes these kids really can "get better". I just finished reading Daniel Isn't Talking and there you go.....If you want any more specifics I can e-mail you privately.

The answers are there, but I don't believe that you will find them in the traditional places. And certainly not in time.

By the way, anonymous, I'm not sure what browser you're using, but as a dedicated mac user, I recommend Firefox as it seems to avoid a lot of problems. If you're using something like AOL, the problem may not be the mac.

No, that didn't work (I think blogger is putting in the lead characters). The email address after the blogger.com is valid (and new, so hopefully everything is working). Otherwise, I have no problem with Wade giving out my regular email address privately.

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